Mary (a.k.a. the Fuzz) and I have collaborated on the following letters. To
avoid overload, I have decided to release them one at a time. This is
primarily for those who could not make the DC trip.
22 Jun 98
O'Fallon, IL 62269
Dear Senator Durbin,
We visited with your Ms. Carolyn Torres the afternoon of 16 Jun 98. Our
reason for coming was to expedite life and money saving research. We
explained our points to Ms Torres and left her with some handouts for you.
However, unless she told you verbatim what we said, these handouts may need
some interpretation.
We were/are asking for your commitment to getting the full $100,000,000.00 in
Parkinson's directed research funds as soon as possible. These funds were
authorized last year when the Morris K Udall bill was passed into public law.
The points we covered include:
One -- Our situation--We showed evidence that Parkinson's disease (PD) is
debilitating, painful, and very expensive, for both the Nation and the person
with PD (PWP). The ability to produce an income and pay taxes is a privilege
we PWP have lost.
Two -- The NIH--This organization seems to be thwarting the legislative will
of the Congress. We stated our belief and showed evidence that the NIH is
reporting "PD related funds" in its dollar estimates for PD research. We
spoke of the difference between "Parkinson's related" funding and real PD
research money.
Three - Action request--We requested that you write to Representative Porter
and Senator Specter, asking them to help you rectify the situation. Enclosed,
please find sample letters with suitable wording (also given at our meeting).
Four - A general statement--We are grateful for SS disability, but would
prefer to get off it following a cure or truly significant treatment for PD.
This is an expensive disease, costing 13.6 million dollars a day (direct
taxpayer costs--more in total economic costs). To understand how much we
personally cost the government, I have enclosed three W. H. Heitman "life
salary charts". Before my symptoms began, I felt myself particularly lucky
and able to contribute and earn an income. I had great parents, a benign if
somewhat "nerdy" raising, and a great education. I also had priceless
experience. (See the copy of my Webpage -a printout was given to Ms. Torres)
When I finally had to give up my USAF career, I was a "troubleshooter"-charged
with reforming a poorly managed office at Mt Home AFB. I loved it!
I have no way of putting a dollar estimate on that, and the job required hard
work but I was certainly competent at it. PD robs everybody.
Please let us know if I/we can be of further assistance.
Best regards,
e-mail- [log in to unmask]
Time is money. Time is life.
End Parkinson's Disease, now.
